Messy Miracles, a good analogy for our children. Anyone who knows us, life here is usually messy in one way or another. We don't focus on the past messes, just learn to deal with the one at hand and move on. But sometimes, those messes are where the real family moments happen and where true, unquestionable bond of love can be found.

Saturday, April 25, 2015

January 20th
I receive a call, Sergio has a fever. Off to the school I go, get him, draw labs, cultures, start antibiotics. He gets hotter and hotter. I give a dose of toradol and Tylenol. He finally cools down.

January 21st
3:00 am, my phone rings. Sergio is 103 degrees. I come to his room and find him shaking violently as he spikes one of his very high temps. His nurse and I prepare for him to go to the ER immediately. I give another dose of Toradol and push a bolus of IV fluids. His heart rate is in the 190's. I know he has a severe line infection (thanks to his usless gut).

4:00 am, arrive at the ER with Sergio, no longer shaking and a temp of 105. I've already started everything needed for the sepsis protocol the ER uses. So we sit and wait for a room, while he cooks and I watch the monitor.

6:00 am I can no longer look at the Blood Pressure numbers and find a doctor and insist they do something. She orders a bolus of fluid. We are transferred as a floor patient to the ICU because it's the only room left in the entire children's hospital.

3:00 pm, Sergio is sitting in his bed playing with water, he looks much better, but clearly not well. Cultures are positive for a gram negative bacteria called Klebsiella. It is his arch nemesis. It's the same bug that put him in the PICU on a ventilator for 5 days in 2013.

January 23rd. Sergio looks wonderful. He's running the halls, kicking his potato head, rocking his chair and climbing out of his bed. We go home at 3:00 pm on two antibiotics.

3:30 pm I arrive home, he is shivering. I quickly find ways to justify the shivering and try to reassure myself that he is ok.

5:00 pm Sergio has a temp of 101.5. Take a deep breath, cry that it's all starting again just 2 hours after discharge. Offered the option of trying one dose of Tylenol as the only intervention and seeing "what happens".

January 24th
12:05 am Phone rings. Sergio is spiking quickly and he is shaking violently again. Throw him him in the car, shaking and all (which you should understand is profoundly painful!) and race to the ER again.

3:00 am Moved to the PICU as a "step down" patient and managed by the PICU docs. He is doing well and seems to be responding.

January 25th
7:00 pm After getting a blood transfusion due to anemia caused by the sepsis infection, Sergio develops some very strange reactions. The attending physicians are convinced he has a clot. We head to CT scan to look. He looks off but nothing specific. CT all clear, just Sergio's body doing strange stuff without explanation as usual.

January 26th
9:00 am Sergio is not himself but he is no longer "sick". Very sleepy, but once up, plays hard and walks the halls. Has some respiratory stuff going on.

3:00 pm - Looks much better. Causing trouble, playing in the sink. Going home on two antibiotics again.

January 27th - Had a good night. Doesn't look like he feels well in the AM though. Run some errands, to return to Sergio running a fever.

11:00 am - Back in the ER for the third time in five days. This time, he isn't bouncing back. Several boluses giving. Spikes to 105.4. Given Tylenol. Cools down, looks a bit better. No room in the PICU so sent to regular floor.

3:00 pm - Another fever spike, this time his profusion is severely compromised, his blood pressure is way too high, a sign it will go the other way in the near future. He is moved to the PICU as a full PICU patient.

6:00 am - Sergio is now on maximum dopamine support to keep his pressures up. Waiting on emergency surgery to remove his infected line and place a PICC line in his arm in the interm. Blood transfusion, platelet transfusion, antibiotics, antifungals, fluids, dopamine all keeping him afloat for a while. The fluid is catching up though and his lungs get "wet' and he struggles to breath.

January 28th - Struggles to breath continue. Blood pressures are very, very high (170/110) due to fluid overload. Wean off of Dopamine to help bring B/P down. Give lasix to help pull some off. Needs several potassium infusions to keep it up. Give does of IVIG to help boost his immune system as it has crashed in response to this infection.

January 29th - Sergio drops six pounds of fluid in less than 18 hours, he had gained 13 pounds in just three days. Breathing is better, but still needing O2. Develops awful cough. Due to ongoing headaches and needing strong pain meds, CT scan of head ordered.

January 30th - Feeling better. Cough continues. Cultures are negative so we stop all antibiotics. Getting more potassium.

January 31st - Fever returns to 103.4. All antibiotics and steroids are restarted. More potassium.

February 1st - Flu A positive. Someone in the hospital gave him the flu. More potassium.

February 2nd - Cultures are neg. so we stop all antibiotics and steroids again. On Tamiflu for the flu. No longer needing any O2. Still getting potassium infusions daily.

February 3rd - Fever returns to 103.7. All antibiotics and steroids are restarted. Frustration abound for everyone. White count plummets. More potassium.

February 4th - Sergio is looking good. Playing, happy, more energy. Decision is to wait one more day and discharge on all antibiotics if still good. Increased Sergio's potassium in his hydration and TPN to maximum amounts. One more infusion.

February 5th. - Sergio GO'S HOME!!!

We are now over 5 days out from the completion of his antibiotics and thus far doing great. Praying all this is behind us.

This is a boring recount of what it's like for my sweet baby. He goes through so much just to live, be happy and play. He doesn't care how sick he "was" as long as he feels good again, he moves on. That's the reason I fight so hard for all of my kids. They WANT to live. So, I will give them every single chance in life to do so, regardless of the obstacles stacked in front of them.

WOW!! It’s been a
long time since I’ve updated my blog. I’ve
been remiss in my duties keeping you up to date on the latest and greatest from
the Curkgang. I’m sure you’ve all be
waiting on baited breath for the daily going ons in our home and life (insert
eye roll). Actually, I’m pretty sure you could live the rest of
your lives having never seen another update from me, but heck, I’m going for it
anyway JUST in case someone out there can’t survive. I’d hate to be responsible for the early
demise of one of my faithful reader s (all 13 of you I think) J .

So what’s going on. . . . a lot and not much. I’ll start with our littlest one (in size
only, as his attitude MORE than makes up for that). He had a rough patch back in January with a
nasty three week admission, several trips to the PICU and eventually the loss
of another central line. That line was
replaced with a PICC (peripherally inserted central catheter) in his upper
bicep. Since that time, he’s had an amazing
run. There have been two fevers episodes
(scares) but both were successfully treated at home with our wonderful protocol
that allows me to do it all without going to the ER.

With this run of health, Sergio has successfully toilet
trained during the day!!! Not without
some interesting twists because that’s just Sergio. First, he’s discovered he’s now his own
producer of liquid (water) to play in!!
Wah Hoo!! Yesterday he was
playing in his bucket of water and it wasn’t quite as full as he wanted, soooo
he filled it up more, by letting loose a bladder full of highly dilute
urine. He had a devilish smile on his
face as he proudly looked at me solving his own problem. Needless to say, he’s not left unsupervised
for any length of time now.

On another Sergio front, he received the topper to his bed!!
Now he is safe and secure in his bed. He
had learned how to stack pillows and blankets to pull himself over the top of
his bed (which is level with my chin, thus high off the ground) and we were
terrified he was going to topple head first out of the bed. With some searching, I was able to secure a
couple of grants to cover the $2,000 enclosure.
These special needs companies make a killing on these much needed
products. So frustrating! But, he’s now
safe and sound.

Ok, onto Nettie who has big news to share too!! After her knee infection, 5 week hospital
stay and a major decrease in mobility due to the now scarred knee, Nettie’s
physical health has taken a hit. While
in high school, we choose a power chair for her. This was to help her stay in pace with her
peers, to be higher, thus more approachable, and to decrease the fatigue of
moving all over the large building using a manual chair. She had access to a school bus and ambulette
service to transport her in the power chair.
However, once she graduated, moving the chair from the house was impossible
(we do not have a van with a lift). The
new funding from Albany does not allow her to access the ambulette service
(wheelchair van taxi’s) if she has staff that can transport her. Obviously you’re never going to find staff
who own their own wheelchair adapted vehicle!
So, we requested a manual wheelchair.
It was flat out denied from the insurance. The one she has now (the one in many of her
pics) is a typical hospital wheelchair and it is causing severe back and neck
pain. She is now requiring bracing of
her neck and back to prevent further damage.
So, rather than take up a fight I was going to lose, we opted to take a
different approach. Annette’s card
business has allowed her to purchase several items to help her remain independent. She has purchased new braces for her ankles
(the ins. Only covers one pair every 2 years and she needed new ones at 18
months), shoes to go over the braces and has almost enough for a three wheeled
adaptive trike. We decided to start a
KickStarter campaign to try and promote her card business and raise the funds
she needed for her wheelchair! It was SUCCESSFUL!!!! She raised enough to purchase the wheelchair,
card making supplies and maybe a new computer to help her produce her labels
faster. She received a small Cricut
(scrapbooking machine) for Christmas two years ago, but has never had a
computer to use it with. She’s so
excited about the new things she can do with her cards with this machine and
computer!! We were blown away by the
support, but honestly, this child deserved it and I’m so happy she was
successful.

Joshua and many other Special Olympians were honored by the
Liverpool Lacrosse team. He wore one of
the players jerseys and were presented on the field! What an honor! Joshua is also going to the PROM!! I’m not sure with who yet, he doesn’t have a
date secured, but we’re working on that.
He’s very excited to go. This
mama’s heart is breaking and bursting at the same time. Such a passage of rite but, it signals a finite
time remaining for school before we must face the reality of adulthood. Joshua’s unique combination of needs will
preclude him from working independently. . . ever. He is not a highly motivated individual
(unlike Annette who, once she gets an idea in her head is unrelenting until she
achieves it). The future is just around
the corner now, but we’ll take it one milestone at a time.

Tray is doing phenomenal in school and in health. He has joined the track team and is doing
shotput and discus. He is enjoying it
tremendously. This summer we are looking for activities to keep him busy and
not glued to the computer games. He’s
not really ready to work yet (developmentally or maturity) but he’s close. I’m going to find some volunteer opportunities
to work on those skills needed for employment.
He’s also going to his heart camp this summer, though he ages out next
year! So hard to see my “babies” growing
up!!

Marriela is thrilled she is not attending summer school this
year. Though she qualifies, she made the
announcement that she will NOT be going because she is in middle school and no
longer needs to do baby things. Her
newest obsession is sextuplets. S

he is
determined that she is going to have said sextuplets (“either she will have
them by pushing them out or she will adopt sextuplets” – at least she’s
flexible in the methodology of obtaining this brood of children). With the concept of sextuplets comes the need
to locate and write down EVERYTHING that she may need for six babies at one
time. 6 seated strollers, Chevy Suburban
that can fight six children, six car seats, six sippy cups, six swings, six
white cribs, etc. etc. Ohhh, and she’s
moving to North Carolina. She’s going to
live in a house like Matty B has (a freaking giant mansion!) an indoor pool, a
hot tub and she will be contacting Mr. Congel to close Destiny Mall here in
Syracuse to open one instead in North Carolina.
Good luck with that my sweet girl.

Cody is getting ready for another Jui Jitsu tournament right
here in Syracuse. He’s ready, just needs
to work on those double leg take downs and controlling the clock. He’s advanced so fast in this sport. He’s also doing intramural basketball in
school. Last night I took him to his
Spring Fling dance were I saw him dancing unabashed and in no less than TRIPLE
time of the song playing. He does everything
fast – including dancing apparently. I
even witnessed the only “worm” in the room, yes, it was my son in his white
shirt belly down on the cafeteria floor.
Ewwww. A mean round of Pokemon
card trading and the dance was over. It
is so wonderfully odd to have a “typically” developing child!

Peter is done with his courses and only has his internship
remaining. However, there is an issue
between his university and the State of New York and all students in NY must
delay their internships yet again (already delayed it one semester, now it will
be two). That leaves a quandary. To remain active in the program, he needs to
continue taking courses; however, he has completed all of the necessary courses
AND 12 extra credits. We are working
with the university now to see what compensation and alternative plans they
have to accommodate these students.
Peter has also successfully passed his hypnotherapy course and is now a licensed
hypnotherapist!! He is busy setting up his business model and securing an
office to begin servicing clients. So
proud of him!!!

Finally, the one and only, myself. I am finishing up two courses right now that
will finish next week. Then I start the
last of my two remaining courses. I’ll
be done at the end of August and will be conferred my Ed. S. degree in
Education. I too have started my own
business. As an ardent opponent of the
testing madness occurring in education today, and a local advocate for the
refusal movement (which, many of you may have seen, was highly successful in
NY) I have decided to open my own Education Advocacy practice. Education Advocacy of CNY will be up and
running by the end of May. I have
several families I’ve already been working with and know that this is a huge
area that needs to be addressed. I am so
excited to be done with school and putting my skills to work finally!! This will allow me to customize my schedule,
work from home or the office Peter uses and allows flexibility in my time to
meet all of the kids needs while still making an income. The best of all worlds!!

So, that’s where we are.
Could have totally lived without these 1700 words in your day I
suspect. Rest assured, it’ll be another
gap of time before my next update so you’ll have lots of time to recover.